A Qualitative Study of Autistic Adults' Quality of Life During the COVID-19 Pandemic and Lockdowns

Background: Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-at-home orders (known in the United Kingdom as a "lockdown") endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people.Aim: This study explored autistic adults' experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-text responses from an online survey.Methods: In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020.Results: Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care.Conclusions: These findings highlight the importance of giving autistic individuals the support they need to transition back to "normality" as COVID-19 becomes endemic. Community brief Why is this an important issue?The COVID-19 pandemic and national stay-at-home order (known in the United Kingdom as a "lockdown") led to severe disruption and change in people's lives throughout 2020 and early 2021. However, only a few studies have examined the impact of the lockdowns on autistic people's well-being. What was the purpose of this study?The abrupt changes caused by the COVID-19 pandemic and lockdowns may have had a more detrimental impact on the lives of autistic people compared with others. This study aimed to explore the impact of the pandemic on the lives of autistic people and to provide context and descriptions of their experiences. What did the researchers do?We asked autistic adults a range of open-response questions using an online survey in July/August 2020 to understand how they experienced the COVID-19 pandemic and periods of national lockdown. A total of 79 autistic adults from the United Kingdom took part. The questions asked about participants' health and general well-being, their social lives, and sensory differences before (retrospectively) and during the U.K. national lockdowns that occurred between March and August 2020. What were the results of the study?Overall, most people felt that the pandemic had a negative impact on their lives. Many felt isolated and lonely due to lockdowns, and many expressed feelings of distress and anxiety at the prospect of returning to normality. However, several participants did report positive aspects of the periods of lockdown, such as having more time for personal interests and practicing self-care, and having to deal with less noise and sensory overload. What do these findings add to what was already known?To date, much of the research about the impact of the COVID-19 pandemic and lockdowns on autistic peoples' lives has been quantitative (e.g., using scores on questionnaires). This study uses qualitative data (responses to open-ended questions). This study provides important contextualization of how the pandemic and lockdowns have impacted the lives of autistic people and highlights the need for additional support in the years after the pandemic. What are potential weaknesses in the study?This study only includes autistic people, so we cannot be sure whether these experiences are unique to autistic people. Additionally, these findings may not be generalizable to the wider autistic population, including those who were unable to participate (e.g., those with learning difficulties). How will these findings help autistic adults now or in the future?The COVID-19 pandemic and lockdowns are likely to have a long-lasting impact on well-being, which may disproportionately impact autistic people. As such, autistic people may need additional, tailored, support as COVID-19 becomes endemic (i.e., no longer a pandemic but part of everyday life, somewhat like seasonal flu). Additionally, lessons may be learned from the pandemic about how society could be adapted to become more inclusive.

Collaboration in Context: Instructional Coaching to Support Inclusive Classrooms, an American Perspective

Changes in American public education can be linked to wider social movements. New policies and practices have historically emanated from a variety of social problems such as racism and the marginalization and exclusion of populations of children who differ by ability, economic class, and ethnic heritage. In the era of a global pandemic (COVID-19), the authors embrace the context of civil unrest in the United States as it directly relates to the factors necessary to build effective collaborative relationships in public institutions shaped by history and culture. In this chapter, we position school inclusion in the United States as an issue of social justice. In sharing our positionality and professional experiences as educators, we discuss instructional coaching as a collaborative lever to support inclusion in American classrooms. Our experiences, combined with the literature, serve as evidence that the formation of deeply meaningful professional relationships rooted in authentic empathy may serve as a powerful collaborative action to transform unjust structures. These relationships as actions in and of themselves, thus, form a psychological foundation (community consciousness) needed to effect positive change. The chapter is organized into three sections that examine instructional coaching for inclusion on marcopolicy, mezzo-academic, and microsituational levels. The chapter ends with a call to action applicable to PK-12 educators and leaders, as well as instructors and professors in teacher preparation programs.

Robust pandemic control through linearizing variable transformation

The COVID-19 pandemic is characterized by sys-tem instability, nonlinear dynamics, significant delays and large uncertainty. This combination makes it challenging to design robust feedback controlled mitigation strategies. We proposed a linearizing variable transformation that translates the challenging nonlinear problem to linear control of an integral system with time delay. In the transformed problem, robust linear controller design and analysis tools can used, and this system can be made robust to significant uncertainty. So what is the catch? This paper compares the achievable performance to a gain-scheduling approach. We did not find significant limitations to performance as a result of the transformation. Locally, the same performance can be achieved. In transients between equilibrium points, the variable transformation approach maintains robust stability and performance guarantees. © 2022 IEEE.

Impact of COVID-19 on the management of ureteric stones in the UK: the COVID Stones study

Introduction: In the COVIDStones study, we aimed to determine how management of ureteric stones changed during the COVID-19 pandemic in the United Kingdom. Materials and Methods: The COVID Stones study was a multi-centre retrospective study of consecutive adults diagnosed with CT-proven ureteric stone disease at 19 UK sites. We compared a pre-pandemic period (23/3/19 to 22/6/19) to a period during the pandemic (the 3-month period after the first SARS-CoV-2 case at individual sites). Results: 3755 patients were included (pre-pandemic = 1963 patients;pandemic = 1792 patients). Patients during the pandemic had significantly lower hospital admission rates (pre-pandemic = 54.2% vs pandemic = 46.6%, p<0.001), shorter length of stay (mean = 4.0 vs. 3.2 days, p=0.01), and higher rates of use of alpha-blockers (16.1% vs. 23.3%, p<0.001). In the cohort of patients who received interventional management (n=790 [44.1%] vs. n=686 [34.9%]), rates of ESWL (22.8% vs. 33.9%, p<0.001) were significantly higher;rates of ureteroscopy (56.7% vs. 47.7%, p<0.01) and stent insertion (67.9% vs. 54.5%, p>0.001) were lower;and there was no difference in rates of nephrostomy (p=0.76) during the pandemic. During the pandemic, there was no difference in success of primary treatment overall, including both non-interventional and interventional modalities (prepandemic= 73.8% vs. pandemic=76.2%, p=0.467), nor when stratified by treatment modality or stone size. Conclusions: Despite fewer invasive procedures performed during the pandemic, we demonstrated no difference in success of treatment, without an increase in adverse outcomes. This leads us to question whether the management of ureteric stones can be optimised further.

Collaboration in context: Instructional coaching to support inclusive classrooms, an american perspective

Changes in American public education can be linked to wider social movements. New policies and practices have historically emanated from a variety of social problems such as racism and the marginalization and exclusion of populations of children who differ by ability, economic class, and ethnic heritage. In the era of a global pandemic (COVID-19), the authors embrace the context of civil unrest in the United States as it directly relates to the factors necessary to build effective collaborative relationships in public institutions shaped by history and culture. In this chapter, we position school inclusion in the United States as an issue of social justice. In sharing our positionality and professional experiences as educators, we discuss instructional coaching as a collaborative lever to support inclusion in American classrooms. Our experiences, combined with the literature, serve as evidence that the formation of deeply meaningful professional relationships rooted in authentic empathy may serve as a powerful collaborative action to transform unjust structures. These relationships as actions in and of themselves, thus, form a psychological foundation (community consciousness) needed to effect positive change. The chapter is organized into three sections that examine instructional coaching for inclusion on marcopolicy, mezzo-academic, and microsituational levels. The chapter ends with a call to action applicable to PK–12 educators and leaders, as well as instructors and professors in teacher preparation programs. © 2022 by Emerald Publishing Limited.

Identification of a microbiome signature predicting immune checkpoint inhibitor outcomes across multiple cancer types in the MITRE study

Background: The gut microbiome is implicated as a biomarker of response to immune checkpoint inhibitors (ICIs), based on preclinical mouse models and preliminary observations in limited patient series. Furthermore, early reports suggest faecal microbial transfer may have therapeutic potential, converting ICI nonresponders to responders. So far, identification of specific responsible bacterial taxa has been inconsistent between published studies, which limits future application. By culturing and metagenomic sequencing of stool sample bacteria, our group has identified a unique microbiome signature, which appears to be predictive of response to ICIs across all key published series as well as our own melanoma patient series (Robinson M et al, J Immunother Cancer 2020;8(suppl 3):A404). Because the patient numbers in all published series remain low, we are now further exploring and validating this microbiome signature in a larger scale study across several different cancer types. Methods: MITRE (Microbiome Immunotherapy Toxicity and Response Evaluation) is a UK NIHR portfolio multi-centre prospective study funded jointly by Cancer Research UK and Microbiotica (NCT04107168) Up to 1800 patients receiving ICIs will be recruited over a 5-year period. In the first stage 1: anti-PD1 monotherapy, cohort 2: antiPD1+anti-CTLA-4 combination), renal cancer (cohort 3: anti-PD(L)1+kinase inhibitor, cohort 4: anti-PD1+anti-CTLA-4 combination) and nonsmall cell lung cancer (cohort 5: anti-PD(L)1 monotherapy, cohort 6: antiPD(L)1+chemotherapy+anti-angiogenic) are being recruited, 50 patients to each cohort. A cohort-specific, simulation-based power calculation will then be performed, guiding subsequent recruitment. Stool and blood are collected prior to treatment, at 3, 6 and 12 months, or disease progression (whichever is sooner), as well as after any grade >3 immunerelated adverse events. Patients collect and freeze their own stool samples which are cultured and subjected to shotgun metagenomic sequencing. Plasma, whole blood buffy coat, RNA and PBMCs are being stored for correlative studies. Any tumour, or organ biopsies, taken prior to and during treatment are also being collected. Clinical data collection includes treatment, disease response (using RECIST criteria) and toxicity. The primary outcome measure is 1 year progression-free survival. Patients are also asked to invite a household member to be part of the study control group. Recruitment started in July 2020 The Covid-19 pandemic hindered recruitment last year, but the protocol was amended to incorporate a Covid-19 substudy (to document testing, infection and vaccination) and adapt processes for remote trial delivery as much as possible. As of February 2021, 7 sites have opened, 17 patients and 5 household controls have been recruited.